New member and I think this is the place?
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October 1, 2007 at 8:54 am
Hello all, I’ve been lurking here for a while as I waited for a dx from my neuro. My trek hasn’t been near as long as some on this board that I’ve read. Started last February when I went to the hospital wondering if I was having some sort of stroke, as I suddenly got horribly week, and my face was tingling as if on fire. Obviously that wasn’t the case, but it got me to find a new primary provider, who actually took an interest in all of my “weird” symptoms and sent me to a neuro. That got me the dx of peripheral neuropathy, but all tests came up with no reason.
They tried me on Topamax to help with the pins/needles (did nothing including no weight loss darn-it :rolleyes: ) I started finding that I can no longer go on my lunchtime walks as they would leave me so weak I almost couldn’t drive. Finally I let them do a spinal tap so the neuro could “confirm his diagnosis”. I was pleasantly suprised that it virtually didn’t hurt at all! However, apparently I had a seizure during the process. I’ve been told it is likely because my blood pressure took a dive. It had never happened before, and so far hasn’t happened again. Well, that all came back “normal” as well, other than “a few lymphocites noted”.
Finally my neuro has stated I have “Idiopathich Demylinating Polyneuropathy” or some form of GBS he can’t identify. I’m assuming that is pretty much CIDP?
We’ve started my treatment at 100mg Amantadine three times a day. He said he may mix that with “some other stuff” depending on the results. It’s all rather overwhelming right now. I need to be able to keep working as I supply the benefits for the family — although there are days I wish he could say just stay out of work!
He’s offered IVIG as another treatment if the oral meds don’t work. There’s a big part of me that is leary of taking that step. I read the board here and know that my “stage” is not all that advanced, or at least yet. Is this something that I can expect will likely get worse as I get older (I’m 43 now) or is being more aggressive generally the way to go?
Sorry for my rambling, and thanks for “listening”. I’ve learned a ton from this site and the litterature I received from here. At least when I talk to the doctors I feel well informed and like I can make a reasonable decision 🙂
Rene
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October 1, 2007 at 11:33 am
Hi and Welcome Rene! I have friends in Watertown. Your in a pretty area of NY state! Wait and some will post. I am not good at CIDP but I think it is too early to dx that. You will find it is easier to dx much later on as things change. I don’t agree with the Docs that I had Miller Fisher Variant but just the other day the one Doc told me I have CIDP because I am not getting better quickly like her other patients. They only had GBS from the waist down and are all doing great! Since I am still healing she says I have the cronic form. According to what I have read I had a severe case (life support) and GBS means [B]g[/B]etting [B]b[/B]etter [B]s[/B]lowly and I am only 23 months into this process. I am glad you are able to post here and share your information with us!
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October 1, 2007 at 11:39 am
Hi Rene,
Amantadine, as far as I know, is used with GBS and some CIDP to combat fatigue. I don’t know of it being used for other symptoms. BUT, I am not an MD and make no claim to know all the treatments for CIDP.
It is my understanding that the “first line” treatment for CIDP is IVIG or plasmapheresis. I have had both for 14 years with great success as they keep me basically symptom free. If I try to get off of either one I get weak and can not lift and have great difficulty walking. I would not hesitate to give IVIG a try. For me it was miraculous and very simple. 3- 4 hours of infusion with maybe a little headache and I was on my way, hiking, running etc.
I hope the Amantadine does the job for you. If it doesn’t I really suggest strongly the IVIG.
Luck to you and good health.
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October 1, 2007 at 9:34 pm
Hi Rene, Welcome to The Family. IVIG is usually the first treatment tried because it has a 70% chance of working. Its usually not all that bad, and thats from one who can’t get it again because of a bad reaction to a 2 day treatment;) Plasma exchange has the same success rate as IVIG. Feel free to ask any questions you have or just vent when you need to. Take care.
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October 2, 2007 at 7:37 am
Rene,
I agree with Cheryl. If it is CIDP, IVig is the first step.
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